Stop the Prevacid?! HELP!

[Anonymous]

OH my gosh, my lo is getting worse by the moment and I dont know whats wrong:( I dont have anyone to help and I have no doctor to bring her to until Monday. I dont think I can survive. The neocate has made her worse…she was never this bad prior-on Nutramigen. The neocate constipates, the laxatives give her gas, the prevecid also constipates and could be adding to her belly pain. She just writhes and twists in pain. She isnt even sleeping at night now. It took my husband and I three hours of moving her in the stroller to get her to sleep and calm down last night- three hours! She only stayed asleep for 4:( She gets so hyped up, her eyes dart all around, her arms and legs are pulling up and down..she’s miserable and screaming. We’ve taken her to the Er- they said she’s fine-excpet her belly is full of air/gas. I can hear her tummy rumbling a mile a minute but these belly sounds have been going on for the past several weeks. All the docs said they would clear up on the Neocate-that’s not happened. She’s been on the Neocate for almost three weeks- there has been zero improvement(minus the first 5 days) and things are much, much worse. Do I stop th prevacid (just started it Sunday)? I only started because things were going down hill so fast-her reflux was getting so bad..or so it seemed? Do I stop the Axid and Mylanta and M.O.M?? How much crap can a baby handle in their system? I feel like im poisoning her in my efforts to make her better. My 4 year old has been tantruming out of control and not sleeping either. I feel like my entire world has been turned up side down and I have no idea how to FIX IT!? I dont know where to turn or what direction to go in. All I know is that unlike most of the storied on this board, we are getting progressivley worse, not better.

[Anonymous]

I do need to mention that the doc retested her poop(only one sample though) and it’s cleared of blood…

[Anonymous]

My goodness!!!!

Could it be the aspartame in the solutabs? Some babies just cannot handle it. Maybe the capsules would be better for her?? My son could not handle sodium bicarbonate- so he could not do zegerid or compounded forms of drugs, but he did OK on solutabs even with his milk allergy. they are just all different and have sensitivities to different things.

I am going to try and research if there is an ingredient that is in Neocate that is NOT in Nutramigen. Maybe Corn? Oh sweetie, I am just nearly in tears for you b/c it brings it all back for me.

This will get better, it just seems out of reach right now. I thought Landen would never ever sleep. He jerked awake every few minutes. I cried my ENTIRE 13 week maternity leave and when I was not crying I was a zombie donig research or dragging him from doctor to doctor.

This too shall pass. Beleive me, I say this all of the time like a broken record to many mommies but I feel it to be true in my heart: God gives these babies to the moms that he KNOWS can handle it! You will get through it and it will make you stronger!

jilly782008-07-24 08:02:41

[Anonymous]

Jill- what finally made your son better? I feel like I cant breathe…I really feel like I can’t breathe. And as much as the lack of sleep is horrible-it’s the not knowing what to DO!! I have been through some really, really hard times in my life(we all have)-none of which I thought could ever be beat. But watching my baby suffer and not knowing if im helping or hurting is extreme torture. Do you think I should take her off the solutabs? Its just so hard to say because she was on a steady decline even before the solutabs..so I dint know if this is natural progession or if it’s been worsened. Thank you for researching for me, I was also considering the corn..

[Anonymous]

I wonder if Corn is the issue? Neocate has Corn in it and so does most of the other formulas you have been on. If she was better on the nutramigen, if you decide to go back, I would try the Ready To Feed.

I also, if it gets that bad, would go to the ER in one of the reflux episodes. They may admit her and give her some tests to try to help you figure all of this out quicker.

Also, can you use the mylanta cherry supreme for the really bad episodes? This would help us through as well when we were having some breakthrough acid and bad spells.

I am sorry I am not more help….

Ann Marie

[Anonymous]

Sorry, I was writing and then jumped off for a while and you ladies posted in between! 🙂

[Anonymous]

We were on the ready to feed:( Plus, the blood in her stools has cleared up so she was obviously allergic to the Nutramigen, right??

[Anonymous]

https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=2

Check out the post and link by Alexis’s Mom. Is soy an issue and is this an option?

I still think I would do one thing at a time and maybe stay on Neocate a bit longer, but change the form of Prevacid…. Neither of my boys could tolerate the solutabs, although I know lots of other have had a ton of success with it, both of my boys were so much worse on solutabs than they were when they weren’t on anything.

I agree, you can not go back to nutramigen if she had blood in her stool from it…….

[Anonymous]

Ann MArie: in which way did they get worse??

[Anonymous]

monty123 wrote: https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=2

Check out the post and link by Alexis’s Mom. Is soy an issue and is this an option?

I still think I would do one thing at a time and maybe stay on Neocate a bit longer, but change the form of Prevacid…. Neither of my boys could tolerate the solutabs, although I know lots of other have had a ton of success with it, both of my boys were so much worse on solutabs than they were when they weren’t on anything.

I agree, you can not go back to nutramigen if she had blood in her stool from it…….

Thank you Ann Marie , I was LOOKING for that post! I am terrible for searching sometimes! I just wonder if milk AND corn is an issue? In this case, has soy been tried where brown rice syrup is used? I really feel for you!

For Landen, he was not properly medicated until 8 months of age. We switched to Nexium at almost 5 months (20mg packets) and saw a bigger improvement than the 15mg prevacid solutabs we were using. When we moved from FL to MD, we found a pedi that like prevacid, so she took him OFF Nexium and gave us 30mg prevacid solutabs and that is when things REALLY turned around for him. Although him getting on Neocate at age 6 weeks kept things ‘under control’ all along as far as his allergy to milk was concered.

I just think refluxers with allergies need both things addressed (the formula and the meds) and it can be soooo hard figuring it out!!!!

jilly782008-07-24 08:59:09

[Anonymous]

p.s. I agree with Ann Marie, I would fax the doctor about maybe changing the form of prevacid (maybe capsules?). That is the only form of a PPI that comes to mind since there are sweeteners in so many other forms of PPI’s and that could potentially bug her. It could even be the miniscule amount of lactose too.

If no change after a couple weeks of capsules, then look to the formula. It could be that rare chance of it being a corn allergy or something. I hate bringing it up to people b/c it is just another variable and something else to dwell on and think about. But it does exist and has happened to people.

I guess if it were me, I wouldn’t change too much at once. I would try the med change first, then go from there.

[Anonymous]

You poor thing! I agree with what the others have said. Only change one thing at a time. I know that the waiting game is awful, especially when things seem to only be getting worse. I have read on here several times that neocate can take 4-6 weeks to work. I would try to switch forms of prevacid for now and then change the neocate.

Poor baby and poor mommy!!! Hang in there!

[Anonymous]

Fussy, Fussy, Fussy! Unbelieveably uncomfortable and screaming. Dylan was a bit older so he was agressive and angry, but Carter just screamed.

Horrible behavior….

[Anonymous]

Jill-I tried to PM you re: sodium bicarbonate but your mailbox is full; what was the consequence w/ the SB? Was is blood in stool? Just realized that the CaraCream contains this. Evan’s had blood in his stool long before the caracream but just wondered. we’re grasping for anything @ this point.

[Anonymous]

erinntx wrote: Jill-I tried to PM you re: sodium bicarbonate but your mailbox is full; what was the consequence w/ the SB? Was is blood in stool? Just realized that the CaraCream contains this. Evan’s had blood in his stool long before the caracream but just wondered. we’re grasping for anything @ this point.

Sorry about that! I’m bad about letting it get full! It’s all clear now-BTW.

Landen did not get blood in his stool from sodium bicarb. He had classic symptoms of the warnings that even marci-kids gives about sodium bicarbonate bothering some babies. He would get really bad gas pains (the back of his little head would sweat from them!) and although he was a silent refluxer, he suddenly started vomiting up feeds that he took hours prior. I tried giving it on empty stomach, full stomach, in between, with or without mylanta, I also used the 40mg and 20mg packets (talking about zegerid here) and he was just plain miserable. The sodium bicarbonate just made his belly so full of gas it wasn’t worth it! Childrens Motrin was terribly rough on his stomach too.

I hope that they can find what is going on with Evan. I read that he is having scopes. Landen had an upper endoscopy and it was so much simpler than I thought in my mind. The anesthesiologist was very good and he was only under for about 10 mins. It was very fast (we had it done in the morning) and by noon he was drinking bottles normally again.

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